today we were admitted into London's Children's Hospital. It had been a LONG hard winter of much sickness and food fails. Those were very dark days for me. Days when tears streamed down my face constantly. Days when I found it hard to breathe. Having a kiddo with a illness you can't *fix* as mama is a heavy burden, those were days I certainly would not have made it through if I hadn't hung on to God for everything. There were so many mixed emotions being in the hospital. Relief because I had nurses and doctors watching Levi, making sure he was okay. Guilt because I had just left my other 2 babes in a panic as Levi was vomiting blood on the kitchen floor, leaving my parents to pick up the pieces of our day to day life with Maggs and Si. I was tired, oh so tired. Emotionally and physically. Last year my life changed drastically. When we got his diagnosis, I started reading blogs on FPIES. They were unnerving, but I was optimistic that we would be okay, we would start Levi on Neocate, an elemental formula. A medical formula that was broken down to it's amino acids so that Levi's body wouldn't have to do it. It has all the *nutrients* a person needs to live. I would be able to stop nursing and start doing food trials. Problem was Levi failed Neocate. He didn't tolerate it at all, he started vomiting more, sleeping less (which was a problem considering he was maybe only sleeping 2 hours at a time) then he got pneumonia. Not only that, he failed the antibiotics that they used to try and get rid of the pneumonia. We realized then, Levi's FPIES was going to be a little more severe then originally "planned". And I was mad. Mad at God then, about why we just couldn't be like so many other FPIES kids that at least had a formula to live on. I had wanted that formula to work SO bad. Now I can truly and thankful say that Levi failing Neocate was one of our biggest blessings. It is number one on my "blessings in hindsight" list. Because he did, I had to begin my research for a natural way of feeding him. FPIES has stretched me in more ways than one. I now have a vocabulary filled with some medical jargon :p I have learned so much about food, and how it can reek havoc in your body, or how it can become truly healing. Ultimately though God is the only, perfect Healer. It has taught me that God has a perfect plan for my life, it might not always be the way I want, but it is good. He is watching over me, and He grants peace in the most unexpected places and times. He is my strength when I am weak. Today Levi is healthy. He is eating broth, beef, a small amount of fish and tolerating many natural supplements that we are using to try and even out the way is body reacts and tolerates foods. He is silly and naughty and definitely two. Last year at this time this all seemed unattainable. But here are. Today we started yellow dock tea, its an herb that is very rich in iron, and hopefully by the end of the week we'll have started a veggie too! It's amazing where God can take you in a year!!
Seriously, he chooses his own shirts out, that's why he ALWAYS has this red train one on. He throws a huge fit if I don't let him wear it. I think maybe it is time to hide it. |
Praise God!
ReplyDeleteYou're so amazing Joce! Love this update! Love his smile!
ReplyDeleteAwww..joce..how I Cried reading this...but what a blessing Levi is!!! I miss him so much! U are an insperation to me...Ur courage i am envious of....U are my sister and I love u soo much! Keep on trusting in God! Ur an amazing mama! Don't ever forget it! Say hi to maggie and silas and adam and levi for me! Happy easter!
ReplyDeleteHi Jocelyn
DeleteThank you so much for sharing your story! You are such a strong woman and i am inspired by reading your blog. My son is 7 months old and has been diagnosed with FPIES. As you already know how heartbreaking it is to see your little one that sick!!I have prayed I have fasted I have confessed the word of God and I am still believing for a miracle. I also would like to get in touch with Pastor Greg but Im not sure how. If you have his contact details , could you kindly forward them to me so that I can email or call him.
Thanks Jocelyn
Im sure your home must be a happy one with Levi completely healed. Praise the Lord!!!
Hi Pat. Can you email me at carrz@bmts.com??
DeleteI would love to share Pastor Greg's info with you!!
Praying for you, there is Hope my friend!
Dear Jocelyn,
ReplyDeleteIDK if you will get this because the last post was so long ago, but my son has FPIES and my wife and I would be curious about which alternate methods you used... including the natural ways you fed Levi.
Marcus at age 2 only had 3 things he could tolerate and he is now 3 and we have 10 foods & 2 oils to cook with. We are making progress for sure, but always looking for other methods / suggestions. If you are willing, please email me at marklabossiere@gmail com.
Thank you,
Mark & Julia LaBossiere